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Ehlers-Danlos Support UK
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Newly diagnosed with hypermobility

Hi im new to the group and was diagnosed with hypermobility this week. I am being tested for inflammation. I get horrible pain in my hips, knees, ankle, wrists and fingers. Abd my back often hurts. I also have IBS, POTS, sensitive to heat and cold, CFS and TMJ. My jaw dislocates and I subluxed my ankle.

I don't know where my rheumatologist is going with this and I wonder if I have EDS type 3 and how to confirm with my rhematologist I have it if I do. I worry he will just say its hypermobility and move on as i have been dismissed so many times in the past by GPs.

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Hi and welcome Kanmi. You sound very much like you have hEDS, but you'll need the results of tests for inflammation to come back as EDS symptoms are really very similar to autoimmune condition symptoms, but with a completely different cause, and a lot of us have both just to complicate matters.

Sadly we have all experienced being dismissed by GPs. Knowledge is power, so the best way to counteract this is to find out loads about hEDS. This website is really very good for that: edhs.info/home

Best of luck with your diagnosis!

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Thank you so much for your help :D

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Hi and welcome🙋. It does sound highly likely to be hEDS (hypermobile Ehlers danlos syndrome) or HSD (Hypermobility spectrum disorder) An EDS diagnosis is now only given based on family history connection, or it will be diagnosed HSD.

I was told I had hypermobility by a general NHS rheumatologist -without knowledge of EDS- and that was that, discharged despite incapacitating symptoms, severe pain, multi body system failings and increasing disability..Although very disappointing at the time, the hypermobility link was a step nearer for me to getting a correct diagnosis. It meant I at least knew which direction to go in. I could however, only get this by going privately as there are few if any rheumatologists within the NHS with complete knowledge of EDS and able to diagnose it. They usually recognise hypermobility but not the impact this has..

I found out all I could about my symptoms and their connection to EDS. My son suffered with similar. We both eventually got diagnosed by a hypermobility/EDS specialist in London...

I agree with Jay. Having knowledge is power, to help manage your own condition, but also you will have to educate medics along the way as they will probably not know about EDS or HSD, how it effects you or the appropriate treatment for a particular problem. I know its a long journey and I hope you can get the answers you need. We are here to support you and happy to help.. Best wishes xxx

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Thank you so much :)

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Also Kanmi, when you next see your GP they will no doubt refer you on to a rheumatologist at your local hospital. Unfortunately I am informed by one of THE specialists in EDS that they will not be able to diagnose an EDS condition unless they have full knowledge of EDS, and at present in the NHS there are only a few. Dr Pauline Ho at Manchester Royal has been recommended. But London is where the specialists are mostly at. Dr Alan Hakim is who my son and I saw there,and I can highly recommend him...

For the majority of patients, going private is the quickest, most successful option after years of being past around in the NHS becoming more upset and frustrated without a correct diagnosis..

Although good things are happening to educate our GP's, with a 'GP tool kit' soon to be available to every practice via an online resource. Also possibly a hard copy in the form of a pack to be sent out. These things will help to raise awareness but maybe not as quickly as we would like, and your best option could be to be seen privately. Or you can ask to be referred to Dr Ho under the choose and book system. But I'm not sure the length of the waiting list if not closed already? You could first ring Manchester Royal rheumatology dept and ask if Dr Ho is accepting patients.

Even with a hEDS diagnosis life is the same struggle. But I've found having the diagnosis has helped me better manage my symptoms, and It was crucial to have for my sons recent jaw surgery as there can be complications. Having all the knowledge of what was needed to pass on to the surgical team helped safeguard against problems and this was a lifesaver! He has recovered well🙂..Also what is good, Since the diagnosis I've found Dr's take my symptoms seriously and are more sympathetic, if not yet knowledgeable, but I do educate them as I go along.

If there's anything you need help with, do let us know xxx

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How does it complicate jaw operations? I see a specialist hospital who have said if the next two options they try on me don't work then I will need to have a jaw joint replacement. If I have hEDS what could cause problems? Thank you so much for your help.

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My sons lower jaw was underdeveloped - Micronathia, he has some marfanoid traits with his hEDS- and problems with this meant chronic TMJ pain - which is common in EDS- and pain, difficulty eating. Laying down caused pain and choking, so getting any restful sleep was impossible. He had surgery to move lower jaw forward.

With EDS bleeding can be excessive. We made the surgical team aware of this possibility and they prepared for it. Thankfully my son does not show this concern and so no intervention was required..I on the other hand bleed profusely, where I am asked by medics if I take warfarin..

With EDS skin can be Fragile and there is also delay in wounds healing. Sutures must be done in a particular way 'without tension' and need to be left in for a longer period to allow healing, and the procedure must also take care to avoid scaring ehlers-danlos.org have information for Skin Surgery...

Some EDS patients can have a resistance to anaesthesia. My son had a previous bad reaction to anaesthetic, and so we met with senior anaesthetist to discuss this.. 14yrs ago When my son was younger he suffered continual viral infections,recurring tonsillitis then epstein barr. He became very seriously ill and was diagnosed with ME. A tonsillectomy was done at the early onset of ME - we didnt know then that this should be avoided at that time- he immediately lost all mobility which lasted for a few years. We now understand some of the reasons behind this, being that my son was suffering from these ME complications at time of surgery, and a certain anaesthetic used was also likely to have contributed. All these factors were taken into account this time. Fortunately my son does not have the severe 'ME symptoms' now, and the anaesthetic which was used this time was planned to be different. There were no complications😁

Some EDS patients also have the comorbidity POTS/Autonomic dysfunction/ cardiovascular dysautonomia and so cardiovascular tests/ echo cardiogram should be carried out prior to surgery, as such a diagnosis will need the anesthetist to plan for the risk of low blood pressure during surgery..

Our EDS rheumatologist Dr Hakim liaised with my sons surgical team, sending information about EDS and advising them.. We did a lot of preparation to ensure all the medical professionals involved in my sons care knew all about his condition and the symptoms affecting him.. But please don't assume that it is always being passed on, or that all individuals down the line are reading it on file/computer, because they're not!😖. Dont be afraid to keep repeating yourself and passing on your info, it results in success!😀 Good luck! xx

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Thank you 😊

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